Dominic Giegerich via Crowdrise
April 15, 2014
BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: Boston Marathon 2014
EVENT DATE: Apr 21, 2014
My Cause: God has blessed me with health and the ability to run. Kate Kauffman is a beautiful, spirited 1st grader whose mobility and ability to speak has been stolen by Rett Syndrome. God, and a series of events in my life and in the lives of many people, have led me to applying and being accepted to Team Rett Fundracers and the opportunity to run the Boston Marathon and raise money for Rett Syndrome research. Exciting is the fact that the studies so far have found that Rett Syndrome is reversible as there are many, many studies and trials being conducted right now. We will hear Kate speak in our lifetime is a very real hope and is the inspiration for my training.
Also check out: http://anitaprofessional.tumblr.com/
Angel Kate: Kate’s parents (picture of the family) Nick and Heather are two of our closest friends here in Anita. They have four children, Grace, Joe, Kate and Zach and our families do a lot together whether it’s ballgames, get-togethers or just working out at the Anita Wellness Center. Kate is mainstreamed into her class at CAM North Elementary in Anita and is loved by students and staff. To know Kate is to fall in love with her smile, her excitable temperament, but it breaks your heart at the same time to see how Rett Syndrome has taken away her voice and has limited her physically.
Marathon: When I concluded the Chicago Marathon in just over five hours I had concluded that was the first and last one I would ever do. My goal was 4 ½ hours but after three months of dedicated training, I dropped off during the week (due to school starting) and that sunk any chance I had of meeting my goal. The fact I’m turning 50 and my determination to hit my goal of 4 ½ hours had me looking for a marathon to run within a year of my 50th birthday.
Why Boston? How?: A friend of mine from the Upper Deck Field of Dreams days had contacted me on donating to his running the marathon last year. He was running for Alzheimers research as his family has been affected by the disease and I donated $25 to his donation website. I figured he qualified since he’s 15 years younger than I am and in pretty good shape. It wasn’t until the bombs went off and they talked about people finishing around the four hour mark (when the were detonated) that I concluded that the Boston Marathon had charity runners as well just like Val who rose money for the American Cancer Society (ACS) to run the Chicago Marathon. While charities like ACS and the American Heart Association would be good charities to run for, and our families share some link towards them, I didn’t feel my “story” would be compelling enough to push my application through the rigorous process of being accepted to raise money and run the Boston Marathon in 2014. Val mentioned it to Heather, who got really excited telling her that Rett Syndrome Association of Massachusetts (RSAM) was located in Boston and the main headquarters for research in the United States with connections to the International Rett Syndrome Association.
Application Process: The Boston Athletic Association (BAA) website had a list of charities but did not list Rett Syndrome (RS) as one. I even hit a dead end with a group called “Rett Racers” who would let you raise money for them, but did not have any “bibs” to give me, however they refered me on to someone who might. Maria responded in June and said late summer, early fall that John Hancock allocates 15-30 bibs to RSAM and that the application would be sent out after they found out. August came and went as did September and Maria kept in contact, saying it would be any day. Finally the first weekend in October she said they had received 15 bibs and applications would be sent out after the weekend. I did not hear back for a week and I began to email her repeatedly over the course of the month of October with no success. I about gave up, and had discussed with Val just doing Chicago again, but started making calls. I finally found out that Maria was winning a battle with cancer and a gal named Joyce got me an application (citing they had the wrong email address) two days past the deadline. I filled it out and a week later was accepted as one of the 15 getting a bib to run the marathon.
Fundraising Events: Heather put on a race and silent auction four years ago that rose nearly $14,000 for Rett Syndrome (RS) and her energy and talents will be put to good use coming up with several events between now and April. We know that CAM High School is holding a “Purple Out” (Purple is the color for RS) night January 17th when the Cougars of CAM will be taking on Boyer Valley (their team’s main color is purple) and we will have several ways to contribute that night in Anita beginning at 6 p.m. I am also working to hold something in eastern Iowa as Heather’s family is from Iowa City as well as a virtual 5K where we can conduct races in several towns for the same cause. There will be much more to come on this front and I will keep a schedule of events on the website as well as Facebook.
More to Come: I will be continually updating the site, posting information on research and trials that show the reversibility of RS and give you more information about Kate, fundraising events, our travel plans and my training. Thank you for reading and any support can muster.
RETT SYNDROME ASSN OF MASSACHUSETTS wrote -
Team Rett FundRacers will be raising money for research in hopes that Rett syndrome can be reversed!
Seen almost exclusively in girls, Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000 females. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors.
Although Rett syndrome leaves all girls and women dependent on others for all of their basic needs, tremendous advances in research have been made since the MECP2 mutation was discovered in 1999.
Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!